By Adriana Gamondes

I’m writing this post for two reasons. First it’s to announce an event which autism families might take an interest in—a chance to protest the proposed changes to the “bible of psychiatry,” the Diagnostic and Statistical Manual 5, which may go into effect in 2013. Secondly, I’m writing to bridge a gap between causes which otherwise share a lot of common ground.  

On May 5^th, a reform psychiatric organization called Mindfreedom has organized a rally in Philadelphia and a march to “occupy” the American Psychiatric Association, which is holding its ritzy, drug industry funded yearly convention at the Pennsylvania Convention Center.  MindFreedom states that it represents those who say they have been harmed or even helped by organized psychiatry but find that recent proposed changes to the DSM will lead to increased practices of over or wrongful diagnoses and over-medicating with drugs that carry severe side effects. Among the scheduled speakers will be activist attorney Jim Gottstein, founder of Psychrights, who lobbies against forced institutionalization and drugging and exposed the dangers of atypical antipsychotics frequently prescribed for individuals with autism.

Autism parents have trouble enough attending their own dental appointments much less rallies but the way this event is organized, there is nothing to stop anyone from carrying a sign protesting the proposed changes the DSM’s autism category.  There is also an occupy rally in Boston on the same day in solidarity with the Philadelphia event.

As far as what the “occupy” umbrella means, no one has been able to figure that out yet, though the Occupy Wall Street organizers clearly stated several demands:

The No 1 agenda item: get the money out of politics. Most often cited was legislation to blunt the effect of the Citizens United ruling, which lets boundless sums enter the campaign process. No 2: reform the banking system to prevent fraud and manipulation, with the most frequent item being to restore the Glass-Steagall Act – the Depression-era law, done away with by President Clinton, that separates investment banks from commercial banks. This law would correct the conditions for the recent crisis, as investment banks could not take risks for profit that create [fake] derivatives out of thin air, and wipe out the commercial and savings banks.

No 3 was the most clarifying: draft laws against the little-known loophole that currently allows members of Congress to pass legislation affecting Delaware-based corporations in which they themselves are investors.

Occupy has been associated with a liberal bent, but according to Republican presidential candidate Ron Paul, this is not strictly the case:

I can’t speak for the people out there because I don’t know who they are or exactly what they are demonstrating against…I can argue the case for their right to express their outright frustration with what is going on. Some are liberals and some are conservatives and some are libertarians and some are strict constitutionalists. And if you read carefully over what I’ve written over the past 10 or 15 years, I talk a lot about this, that eventually we will go bankrupt.  

In other words, political constituency is no obstacle in participating— for the time being, “occupy” is what you make of it.  

Most in the autism community have probably seen coverage of how the proposed changes to the DSM’s autism diagnosis would impact individuals with autism and it’s not a pretty picture. Many believe the proposed changes to the autism diagnosis were designed to reduce the appearance of a genuine rise in the disorder in order to squelch public alarm. The proposed changes to autism criteria would eliminate about three quarters of those currently diagnosed according to one study.

At first glance it would seem our concerns are precisely reverse from those of psychiatric reform groups—psychiatric reform groups are concerned with overdiagnosis of certain conditions and the autism community is concerned about a scheme to underdiagnose the condition in question. But the concerns of the autism community come full circle, since individuals who are “booted out” of the autism diagnosis would then be shoved into other diagnostic categories such as “social communication disorder.” This vague and generalized “SCD” appears to have already been matched up with corresponding drugs in the pipeline promising to “improve socialization” in autism. Of particular concern is the new class of exceptionally dangerous glutamate antipsychotics, though old, off-patent drugs may gain a new profitable life as they’re re-patented for autism. 

Managing Editor's Note: Here's yet another updated version of this post by Adriana Gamondes. Last May we told you that there was a new hire by Autism Speaks of a Pfizer Executive. This week AS made an announcement from the UK: Unprecedented Academic-Industry Collaboration Seeks New Drugs and Novel Treatments for Autism.  In January 2011 Vanity Fair ran an article that said  "Prescription drugs kill some 200,000 Americans every year. Will that number go up, now that most clinical trials are conducted overseas—on sick Russians, homeless Poles, and slum-dwelling Chinese—in places where regulation is virtually nonexistent, the F.D.A. doesn’t reach, and “mistakes” can end up in pauper’s graves? The authors investigate the globalization of the pharmaceutical industry, and the U.S. Government’s failure to rein in a lethal profit machine." The Guardian UK ran America's fatal addiction to prescription drugs Misuse of legal medications kills more US citizens than die in car crashes. The cost in dollars, let alone lives, compels action last June.

By Adriana Gamondes

What if the pharmaceutical industry had a formula for projected drug profits from a massive rise in autism? A formula such as:  P_Y=P×Y
 
And what if the same industry simultaneously rewarded scientists, media companies and organizations which disseminate the concept that there is no autism epidemic, that the rise is “false”, that the numbers have always been with us, but that there’s just increased diagnosis due to increased clinical and public recognition of autism? And what if this industry went on a massive campaign to proselytize the dangers of any treatment method—or any scientific authority— which threatened P_Y=P×Y?

Profiting from something while claiming it doesn’t exist is nothing new. According to some historians, the myth of the flat earth was perpetuated by the Phoenicians to prevent maritime trade rivals from voyaging to England to mine tin. Tin, which seems to have been scarce in ancient Canaan, was an essential ingredient to bronze; bronze was the essence of military power and trade at the time. Advantage in the tin trade gave the Phoenicians untold power.  As long as the lie held, Phoenician fleets regularly made mining expeditions north, trading freely with the natives of the British Isles—while neighboring states feared plummeting off the edge of the world if they dared to sail through the Straits of Gibraltar.

For the analogy, imagine the existence of the epidemic as “England”; autism recovery treatments as the “Straits of Gibraltar”; and maybe psychopharmaceutical drug profits as “tin”.

The epidemic-based profit formula actually exists. It was published in a 2003 study for Eli Lilly by researchers Robert and Julia Gerlai (HERE). From the study: Autism: a large unmet medical need and complex research problem

The question whether the epidemic status of ASD is due to true increase of incidence of the disease or simply its better detection and diagnosis is debated. Nevertheless, according to a most recent report to the legislature on the principal findings from the epidemiology of autism in California, the M.I.N.D. institute has confirmed that the increase of incidence is real and cannot be attributed to changes in diagnostic criteria or misclassification. Autism was estimated to have a frequency of more than 1 in 500 children, while more recent studies found its prevalence as high as 1 in 150 (for examples, see; also see CDC website  HERE). Researchers, private (e.g., Alliance for Autism Research), and government (e.g., National Institutes of Health, USA) agencies have recognized the enormous need. As a result, funding for research has significantly increased. Surprisingly, however, autism is still not among the neurological or neuropsychiatric diseases onto which large pharmaceutical research companies traditionally focus. This is unfortunate as ASD represents a significant unmet medical need with an enormous market size. Consider the following: ASD may be diagnosed as early as 2–3 years of age. Some even argue that successful diagnosis may be made at 8-12 months HERE) Autistic persons can live a normal life span. The market size can thus be calculated as follows: 

 P_Y=P×Y

where P_Y is the number of “patient years,” P is the number of patients and Y is the number of years for which patients live after diagnosis. Calculating with the conservative prevalence estimate of 1 in 500, there may be approximately 600,000 ASD patients in the USA alone. These persons may live for an average of 76 years. Using the conservative age of 3 years for the time of diagnosis, PY may be calculated as follows.

P_Y=600,000×73=43,800,000, i.e., almost 44 million patient years.

We're pleased to announce that Adriana Gamondes is our newest Contributing Editor.  Adriana runs our FaceBook page along with Cathy Jameson, who is also a Contributing Editor. Here is a sampling of her work.  Please join us in welcoming her.

Restraint and Seclusion in Special Education

The Phoenicians: Autism Recovery Denial, Drug Profits and the Media’s Flat Earth

The Bad Business of Autism

By Adriana Gamondes

By now the outbreak of tics and Tourette’s like symptoms among primarily female high school students in LeRoy, New York, has hit the mainstream media—all except The New York Times, which so far has printed nothing on the tragedy.  Why? 

It’s possible that Times management may have foreseen that, after more low-brow media had exhausted the standard diversionary red herring theory for mass outbreaks of movement disorders among females— that the girls suffered from the too-Freudian “conversion disorder” or “mass hysteria”— environmentalists would eventually descend on LeRoy to test the soil, air and water and study potential toxic sources.

The problem for the Times may be that there's no progressive-seeming way to spin the story—mod shade of lipstick or not, the hysteria theory is still a pig.  Though it’s a very useful pig with so many industry-exculpating applications which the Times is deeply invested in. For instance, what if environmental theory in the LeRoy outbreak implicates industries or institutions represented by the Times’ shared board members? 

Maybe in an oblique, all-purpose pitch to de-pig-ify the hysteria theory, Times editors could dredge up a representative from an astroturf breed of Prozac-friendly postfeminist like Elizabeth Wilson, author of Psychosomatic: Feminism and the Neurological Body, in which she argues incomprehensibly that:

Listening to Prozac does not simplistically replace psychological or cultural determinism with biological determinism; more carefully, it opens up the very nature of determination (i.e., certainty, termination, resolution) to interrogation.

But there’s another option beyond bad genes and bad childhoods: Biological indeterminism—as in consumers have little informed consent about the safety of the air we breathe, the food and water we consume and the drugs we take. We are not always in control of how toxins impact us in combination, how they got into us in the first place or our individual toxic susceptibility.

The environmentalists have in fact descended on Leroy::

The competing psychological-disorder diagnosis — Buffalo Drs. Laszlo Mechtler and Jennifer McVige have called it both conversion disorder and mass psychogenic illness — is what's known as a diagnosis of exclusion, meaning it is applied when other more tangible explanations have been ruled out.

Miller and representatives of the environmental and health groups say not enough work has been done to exclude these other possibilities.

"Right now you have a cluster of sick kids, and nobody's quite sure what's going on. It's kind of been a rush to judgment here," said Claire Barnett, executive director of the Healthy Schools Network, a nonprofit group with offices in Washington, D.C., and Albany.

Officials at the state Department of Health, which has looked into the cluster, avoid speculating about the cause. Spokesman Jeffrey Hammond notes there are "many causes of tics-like symptoms," and stress often makes them worse.

But Hammond did say most of the girls did not get the HPV vaccine Gardasil, so any side effects wouldn't have caused the symptoms. He said the physicians in Buffalo also ruled out infections in the patients they saw.

Hammond noted that indoor air testing done for the school district found no evidence of toxic-chemical contamination, a lack of fresh air, mold or other problems. And he argued the lack of symptoms reported by staff members and male students argued against a contaminant spread through the air.

In the end the claim that solely female students were stricken has been contradicted. Aside from vague reports that, among the 15 or so victims in LeRoy, one male student may have been affected, Age of Autism blog editors Dan Olmsted and Mark Blaxill were contacted by the family of Bryan Trembley, a thirty-five year old resident of Bath, New York, who developed very similar symptoms to the girls in LeRoy in September. Bath—aptly named considering that, like LeRoy, the area is low-lying and subject to flooding as the Age of Autism editors documented— is approximately 60 miles southeast of LeRoy, though the towns appear to be connected by an intricate network of waterways.

Bryan Trembley is obviously not an adolescent or female and so far, no one has suggested he suffers from conversion disorder. In a similar past outbreaks, such as at the William Byrd High School in Roanoke, Virginia in 2007, one adult teacher succumbed to tics along with students. Still, the gender disparity and adolescent bent of the syndrome is obvious, which is likely what brought on quaint speculations of victims’ female-borne psychological instability. Who could be more “susceptible” to this kind of sloppy inference than teenage girls?

By Adriana Gamondes

Midnight, our sons and daughters
Were cut down and taken from us
Hear their heartbeats
We hear their heartbeats
Mothers of the Disappeared  ( U2, on YouTube)  
 
I recently experienced a brain freeze after reading the report of a lawsuit filed against government health authorities in Chile on behalf of a vaccine injured child:

Last week a mother filed a US$4 million lawsuit against the government for neurological damage allegedly suffered by her son as a result of state-approved flu vaccines with high  mercury content.   

Sandra Ormazabal says her son Sebastian Ruiz has a language disorder, food allergies and intestinal dysbiosis (mercury poisoning) as a result of vaccines administered by health authorities. She said the vaccines contain a dangerous neurotoxin - thimerosal (ethyl mercury) - in doses higher than permitted by international agencies.

Ormazabal’s attorney Linda Troncoso said the lawsuit was filed against the Ministry of Health and the Institute of Public Health after tests of sample vaccines confirmed unsafe mercury levels. 

“Sebastian is not an isolated case,” said his mother, author of ‘The Silence of My Son,’ a book documenting her son’s health problems. “There are other children who have disorders resulting from mercury poisoning.”

The news struck me in a personal way. For anyone unfamiliar with South America’s not-so-distant history, the full irony that citizens in Chile can file vaccine injury suits against their health authorities but that we in the US cannot may not be immediately apparent.

I’m not particularly equipped to give a crash course, but here’s a quick overview:  “Operation Condor” was a US Cold War era covert campaign to remove perceived leftist or pro-labor democratic governments in South and Central America and replace them with US-approved military dictatorships. On September 11th, 1973, democratically elected Chilean president Salvador Allende was deposed via a US-conceived and backed military coup headed by General Augusto Pinochet, thereby destroying the longest standing democracy in South or Central American history. With Allende dead, Pinochet ordered the murders and “disappearances” of roughly 30,000 “opponents” of the regime between 1973 and 1990, when Pinochet was himself removed from office by referendum.

And of course the New York Times and mainstream media in general reported with gross inaccuracy—if they reported at all— on this and other human rights catastrophes throughout South and Central America during those nations’ similar reigns of terror. Stories of women flayed and hung from trees; of infants swung into rocks by their heels; of the assassinations of priests and nuns; killings covered up as suicides; massacres in public squares; people bound and thrown live from airplanes into the sea; torture, mass graves and the utter absence of justice for the murdered and missing. Because the dictatorships were “client states” erected to protect a breed of American and international business interest in these countries, anyone murdered by the state—even nuns, even children— were mischaracterized as undeserving of justice, as having been terrorists or “radicals”, as having done or been something wrong according to the few, thin, emotionally devoid back page reports of abuses that emerged in the American press in that era. It’s all nearly identical to the way that mainstream media now censors abuses, mischaracterizes victims and protects business interests on behalf of another, more modern version of the “client state”—the global pharmaceutical industry. 

What’s interesting about Allende’s political career, in light of both the current epidemic as well as the Santiago Times’ mention of mass Hepatitis A vaccinations in northern Chile (as a response to the region’s sewage problem), is that Allende was a medical doctor and had written a book on fighting disease among the poor through changes in living conditions, not primarily through medical means. I have no idea whether his niece, novelist Isabel Allende (“House of the Spirits”), drew influence from her uncle when she wrote about the possibility of vaccine-induced seizures and mental disorders in “Of Love and Shadows”, her 1986 novel on political violence and disappearances in an unnamed South American country.

It’s this that Chile recovered from in order to reassert a constitution and personal liberties which give citizens the right to civil action for a child injured by vaccines. But where did this symptom of suppression go to if Chileans no longer suffer from it, at least in this instance? It seems to have come home. But home is anywhere individual rights and tort protections are composting, because the profit interests in question never had allegiance to any country, ideology or population. The “banana republic” is now anyone injured by a vaccine in the US. The third world is us.

By Adriana Gamondes

Dear Jon,

You don’t know me, but we may be breaking up. I don’t actually have time to watch your show, so you won’t be losing a viewer—maybe just an occasional Youtube-clip-watcher, but an avid one. Like so many, I’d once held you up as a sort of icon of independent media in a sea of embedded shills— even if you were once led into “by puppets making prank phone calls” as you put it (oh such good times we had—sigh).

But recent events have left me wondering—are you…could you be… somebody’s monkey after all? And do you dance? Or are you really truly squarely scout’s honor a wincing, cringing, emotionally crippled hypochondriac? Please let it be the latter, Jon, for then there is hope. 

After seeing your recent interview with Homeland Security Chief Janet Napolitano (HERE) which came off like a giggling plug for Sanofi Pasteur, my heart sank. I’m an autism parent and laughter is like a tourniquet to someone who just lost an arm in a wood chipper. In my case, both arms: my once healthy boy-girl twins began disappearing after flu shots at one year of age. It’s laugh or die for parents like me, but I’m no longer sure if you’re the kind of man I can click on in times of need. 

I’ve had to think it through. On the one hand, if I myself were a clever pundit making umpty millions on cable and my parent network, which happened to have pharm-friendly ties, was hinting that I should make nice about flu shots in the midst of a marketing frenzy (and my extraordinary survival barometer was telling me that if I made the wrong noises in this instance, even if I didn’t jump on a couch or subscribe to an alternative church and was careful to never repeat my “mochachino” quip in earshot of a women’s basketball team*,  something else I did or said could easily be turned into an excuse to make things far worse for me than all the other times I’d “bucked the pressure” combined),  I might take a vague dislike of having people spray snot in my face and whip it into a full blown case of hypochondria in my own mind if it made me feel better about “assuming the position”. On the other hand, I might be Monk.